Kjersti Ramstad

Characteristics of recurrent musculoskeletal pain in children with cerebral palsy aged 8 to 18 years.

Aim  The aim of this study was to explore the prevalence, predictors, severity, and impact of recurrent musculoskeletal pain in children and adolescents with cerebral palsy (CP).

Mental health, health related quality of life and recurrent musculoskeletal pain in children with cerebral palsy 8–18 years old

Purpose: To extend knowledge on mental health with children’s self-report and explore mental health and health related quality of life (HRQL) in a context of recurrent musculoskeletal pain in cerebral palsy (CP). Method: Eighty-three participants, mean age 14.2 ± 2.8 years, were assessed with clinical examination, interview and questionnaires. Gross motor function was GMFCS level I 42%, level II 42%, level III 12% and level IV–V 5%. Children self-reported mental health on SDQ (Strengths and Difficulty Questionnaire), HRQL on PedsQL (Pediatric Quality of Life), and pain on CHQ (Child Health Questionnaire). Mothers proxy-reported on the same questionnaires and reported own mental health on GHQ (General Health Questionnaire). Results: Both self-reported mental health and HRQL was better than proxy-reported. Recurrent musculoskeletal pain was associated with more mental health problems and reduced HRQL in self-reports, but not in proxy-reports. Conclusions: In CP, the importance of child-report on mental health and HRQL when possible, in addition to parent proxy-report, cannot be overstated. Close co-operation between (re)habilitation and child psychiatry is urgent. Further research on self-reported mental health and impact of mental health problems is warranted together with a focus on the impact of recurrent musculoskeletal pain on participation. Implications for Rehabilitation Children with cerebral palsy experience musculoskeletal pain that is associated with more self-reported mental health problems and lower HRQL. Because mothers tend to not recognise these associations, self-report (when possible) is essential. A bio-psycho-social perspective in both individual and family approach is important because of the associations mentioned and because parents report that their children have a high prevalence of mental health problems. Assessment of HRQL has the potential to capture both pain and mental health problems, and should be an integrated part of the systematic clinical follow-up.

Continuous intrathecal baclofen therapy in children with cerebral palsy – when does improvement emerge?

Aim:  The aim of the study was to explore the timing of effects of intrathecal baclofen therapy in children with cerebral palsy.

Parent-reported participation in children with cerebral palsy: the contribution of recurrent musculoskeletal pain and child mental health problems

Aim  The aim of the study was to explore the contribution of recurrent musculoskeletal pain and mental health to aspects of participation in children with cerebral palsy (CP).

Hip pain is more frequent in severe hip displacement: a population-based study of 77 children with cerebral palsy.

The aim of this study was to assess whether hip pain was associated with radiographic hip displacement (migration percentage, MP) in a population-based cohort of children with cerebral palsy. Seventy-seven children, mean age 9.5 (SD 1.6) years and Gross Motor Function Classification System level III–V, were assessed. Caregivers responded to the Child Health Questionnaire pain questions and located recurrent pain on a body map. Hip pain was reported in 22 children (29%) and 27 hips (18%). Hip pain was significantly more frequent in hips with MP more than or equal to 50%, in children with spastic quadriplegia, and in those with Gross Motor Function Classification System level V. We conclude that severe hip displacement with MP more than or equal to 50% was associated with hip pain, whereas slight or moderate subluxation did not influence the occurrence of such pain.

Self-reported mental health in youth with cerebral palsy and associations to recurrent musculoskeletal pain

Abstract Purpose: To explore self-reports on emotional, conduct, hyperactivity and peer problems and on prosocial behaviour in youth with cerebral palsy (CP), compare the reports to normative data and to mothers’ reports and to analyse if recurrent CP-related musculoskeletal pain (RMP) influence the self-reports. Methods: Eighty-one youth with CP (mean age 14.2 years, 40 boys) were assessed by clinical examination, interview and the questionnaire Strengths and Difficulties Questionnaire (SDQ) filled in by the youths and their mothers. Gross motor function (GMFCS) was: level I 43%, level II 41%, level III 12% and level IV–V 4%. Results: Compared to normative data, youth with CP reported similar levels of peer problems, less conduct problems (p < 0.01), less hyperactivity problems (p < 0.01) and more prosocial behaviour (p < 0.01). Compared to the mothers’ reports, youth with CP reported lower levels of peer problems (p < 0.01). Twenty-six boys (65%) and 28 girls (68%) had RMP. Girls, but not boys with RMP reported a higher level of peer problems (p = 0.02) than youth without RMP. Conclusion: Self-report on mental health in addition to parental proxy-report is important because it yields additional information. Peer acceptance and the impact of pain on peer problems and participation are candidate topics for further research. Implications for Rehabilitation In children and adolescents with CP, self-report on mental health and peer problems is warranted because they provide different information than proxy-report. Self-reported behaviour may be a starting point for counselling and interventions to improve peer acceptance in children and adolescents with CP. When exploring how pain related to CP influences the daily activities of the individual child or adolescent; health care providers should pay special attention to peer problems and female gender.

The effect of interventions based on the programs of The Institutes for the Achievement of Human Potential and Family Hope Center

Objective: To compare the effect of the programs of IAHP and FHC with ordinary community-based programs. Method: Two-year observational study of two groups of children aged 2–15 years who were following the IAHP and FHC programs (N = 18) or community-based programs (N = 17), with additional material from interviews with parents, and a retrospective study (N = 9) based on file records and parent interviews. Results: Changes in motor and cognitive function, language and behavior in the IAHP/FHC group well below the claims made by these programs, and few differences between this group and the comparison group. Intervention satisfaction lower prior to IAHP/FHC intervention than in the comparison group, and increased when moved to IAHP and FHC, independent of the childrens progress. Conclusion: The substantial claims of superiority compared to other interventions made by IAHP and FHC are not supported, but parents appear to be met in a positive manner in these programs.

Pain hurts worldwide: non‐verbal children and adolescents with cerebral palsy

Do we need another report on pain in cerebral palsy (CP)? We know that pain hurts and we know that pain is common in paediatric CP. Still, the number of papers on a common problem in a relatively common medical condition is far from overwhelming. A recent search in PubMed (September 2015) for ‘pain AND cerebral palsy AND child’ revealed 511 hits. Besides pain prevalence, endpoints of the studies may be sorted into two groups: (1) musculoskeletal issues; and (2) health-related quality of life (HRQL), quality of life (QoL), mental health, and participation. Jayanath et al. report pain recognized by parents in 101 non-verbal children and adolescents with CP, aged 2 to 20 years and living in urban Malaysia. Sixty-five percent reported pain during the last 4 weeks, pain was intense in 17%, and daily pain occurred in 28%. Variables associated with increased pain intensity were increasing child age and spastic quadriplegic CP. Physiotherapy and toileting were the most common activities associated with pain. The two population-based Studies of Participation of Children with CP Living in Europe (SPARCLE) have reported on pain in larger study populations of children with CP aged 8 to 12 years (SPARCLE I) and adolescents aged 13 to 17 years (SPARCLE II). In the latter study, parent-reported pain frequency and intensity are given separately, and analysed in a similar way as in the study by Jayanath et al. In the Jayanath et al. study, the circumstances in which pain occurred are recorded on a validated instrument (Caregiver Priorities and Child Health Index of Life with Disabilities Questionnaire, Comfort and Emotion Section), which is original and relevant. However, in the SPARCLE II study, a list of very similar circumstances was used. Pain during physiotherapy is addressed in both studies. The most striking finding in the Jayanath et al. study is that socioeconomic factors, including parental education, were not associated with parent-reported child pain; just as it was not in the European SPARCLE II study. Further, the finding that pain intensity, but not pain frequency, increased with increasing age is to my knowledge original and of clinical relevance. The International Association for the Studies of Pain (IASP) definition of pain tells us that pain is ‘an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.’ In CP, sources for stimulation of nociceptors (that will signal potential tissue damage) are muscle overuse, strain caused by involuntary movements, immobilization, and atypical joint compression from the imbalance of muscle activation across joints. In line with this, early literature on pain in paediatric CP describes a variety of orthopaedic issues targeting musculoskeletal tissue. Newer literature tends to include ‘any pain’ and complex concepts such as QOL and HRQL in which bodily discomfort or pain is included. The few studies on pain and mental health in CP indicate that pain is associated with an increase in mental health problems. A somewhat larger body of studies indicate that pain in CP is associated with decreased participation. These newer studies leave no doubt that pain is important in the lives of children and adolescents with CP and that both personal and environmental factors may influence how much pain hurts. In our struggle to prevent and relieve pain in CP, we need pain reports across the lifespan from people living under diverse sociocultural circumstances. To be able to compare results, similar methods should be chosen. From that perspective, Jayanath et al. contribute substantially with their near replica of the parent-reported pain part of the SPARCLE II study. On the other hand, the disease-specific target organ in CP is musculoskeletal tissue, and secondary musculoskeletal problems (including pain) are even part of the CP definition from 2006. Time has now come to swing the pendulum from studies of ‘any pain’ in CP back to studies of musculoskeletal pain. At the same time, we should not lose sight of our bio-psycho-social frame of reference.

Associations between recurrent musculoskeletal pain and visits to the family doctor (GP) and specialist multi-professional team in 74 Norwegian youth with cerebral palsy

BACKGROUND Musculoskeletal pain in cerebral palsy (CP) is common, but probably undertreated. The aim of the study was to explore if recurrent musculoskeletal pain (RMP) related to the CP condition was associated with visits to the family doctor [general practitioner (GP)] and specialist habilitation centre in youth with CP. METHODS Seventy-four youth with CP (mean age 16.5 years, 40 boys) from the same geographical area were assessed by clinical examination, semi-structured interview on pain (adolescent and parent together), the two questions on pain from the Child Health Questionnaire (parents only) and a structured interview on health care services. Gross Motor Function Classification System was level I 39%, level II 23%, level III 8% and levels IV and V 30%. RESULTS Thirty-five participants (47%) had visited their GP last year, and 49 (66%) had visited the specialist habilitation centre. The presence of RMP (n = 58; 78%) was not significantly associated with having visited the GP or the specialist habilitation centre. Still, in participants with RMP, increasing pain severity was associated with having visited the GP. Rest, massage, change of position and oral drugs were the most common measures taken to relieve RMP. Three adolescents with RMP did not take any measures to relieve pain. CONCLUSION Youth with RMP do take measures to relieve pain, but usually not in the direction of consulting the health care services available unless the pain is severe. Both youth with CP and their caregivers should be encouraged to discuss RMP with their professional network of care.

Adolescents with cerebral palsy and their contact with the GP and the habilitative services

BACKGROUND Cerebral palsy (CP) often entails a need for health and social services throughout life. Upon scrutiny, it has been found that the transition from services for children and adolescents to services for adults is particularly challenging. The study investigates contact between adolescents with CP and their GPs/habilitative services up to and after the age of 18 years, and the percentage who have an individual habilitation plan (IHP). MATERIAL AND METHOD An attempt was made to identify all those with CP born in 1992 and 1993 and resident in southeast Norway. Seventy-four patients were included (time point I, interview and clinical examination). Forty-two (57%) responded at the follow-up examination (time point II, questionnaire). RESULTS At time point I, 35 (47%) of the adolescents had consulted their GP in the past year, 49 (66%) had been in contact with the habilitative services, and 42 (57%) had an IHP. Twenty-eight (38%) used mobility aids. Use of mobility aids gave lower odds of consultation with the GP. Longer distances from home to the habilitative services gave lower odds of contact with both the GP and the habilitative services. Five adolescents with mobility aids did not have an IHP. At time point II, the percentage who had consulted their GP had increased somewhat, the percentage who had been in contact with the habilitative services had reduced, and the percentage who had an IHP was unchanged. INTERPRETATION The findings reinforce the assumption that the health services provided to disabled adolescents are less locally based and less well coordinated than is supposed, and that there may be geographical differences in the service offered.